Profile
Hello! I'm Leonie. I’m from Malaysia. I am nineteen this year, and I have Non-Hodgkin’s Lymphoma - a kind of blood cancer. I’m just trying to live my life to the fullest, without any regrets. I'm grateful that I’m still able to wake up to a brand new day and know that I'm still alive.
I refuse to refer to my condition as a disease. I would rather phrase it as a 'series of unfortunate events'.
I learn something new with each passing day. This is the story of my journey, and you're welcome to follow me in every step that I take.
If you would like to learn more about me and my condition, feel free to click on the navigations below. If you have any queries or would just like to say hello, drop me an e-mail at dancingpapercranes@live.com.my and I'll try to respond as soon as possible!
Cheers!
Cancer in My Point of View
I was officially diagnosed with Non-Hodgkin's Mediastinal Large B-cell Lymphoma in July 2010. I was seventeen. I was in Form 5; my last year of secondary school, preparing to sit for the SPM examinations.
I would consider myself an average teenager - a girl who just wanted to have fun, with her quirks; trying to survive life as a teen.
It all started with me coughing non-stop after a bout of the common flu. Despite making several trips to my family doctor's clinic, the cough just won't seem to go away even after months of being under medication. Several prescriptions of cough drops later, my family doctor suggested to my parents and I to have a chest X-ray done for me.
A large tumour was discovered; situated in between my lungs, right in front of my heart. The tumour was pressing against my trachea, causing me to have slight breathing difficulties and all that coughing.
I stopped going to school almost immediately. My parents and I went on this journey to seek advice from specialists regarding my condition.
Next, I had a needle biopsy done which confirmed that the tumour consisted of active cancer cells. I had to go for a surgical biopsy to classify what kind of cells were they, so the proper treatment could be administered right away.
The cancer had then spread to my pancreas, kidneys and liver.
Afterwards, I went through six cycles of chemotherapy(R-CHOP) and self-studied for the rest of the year. I was lucky that I was fit enough to sit for my SPM examinations at the end of the year right after my last chemotherapy session scheduled for me was completed. Or else, I wouldn't be able to successfully graduate from secondary school. I had a lot of people telling me to just skip the examinations and relax for a bit, but my stubbornness got the better of me. I was determined enough then and thankfully, I did alright. At least I could fully focus on getting myself treated without worrying that I did not complete even my most basic education in Malaysia.
At the end of 2010, I went for a PET scan. My tumour did shrink, but it was still there.
When 2011 came, I went for radiotherapy this time. I had 25 fractions done.
I thought I was on the road to recovery at long last, but unfortunately…no.
A few days before my scheduled PET scan, I felt extreme soreness at the right side of my abdomen. It made me lose sleep at night, and my coughing fit was back. The oncologist in charge of my treatment for radiotherapy felt something near my right kidney. I went for a PET scan the very next day, and found out that my cancer had spread again. New tumours surrounded both my kidneys once more and my lower spine. Radiotherapy was crossed out from the possible ways of treatment, since the radiation will damage my kidneys, affecting their function tremendously.
I had three more cycles of chemotherapy(R-ICE) done. This proved effective for awhile, but after every session - the cancer would get aggressive and we went back to square one. Finally, it was decided that I was to undergo an autologous stem cell transplant. I had my stem cells harvested, and I went through a few days of high-dose chemotherapy before the transplant. I was hospitalised for a month. I had zero immunity, and blood infections which caused high fever haunted me. I made more trips back to the hospital to rid of the infections.
I am currently under quarantine and recuperating from the transplant; dealing with the side effects from both the transplant and my radiotherapy sessions - causing breathing problems, dizziness, fatigue, etc. The latter is the cause of a now weak heart.
I went for another 27 fractions of radiotherapy due to a tumour above my left kidney discovered by a PET scan in December 2011. My left kidney has lost its function.
Through another bout of coughing, I was advised to go for a chest X-ray and have an ultrasound done at the abdominal area. It is confirmed that my cancer relapsed for the third time. I am now under a new kind of medication.
***
So much had happened throughout me battling cancer.
Other than the physical challenges I have to go through, I also have to deal with my decreasing level of self-esteem and emotional health.
I do admit, I am a typical girl when it comes to me wanting to look pretty. You may call it vanity, but I say it's just me wanting to look presentable and good.
Imagine, I went bald twice; not once, but twice! Surprisingly, no tears came! (I later realised that it’s the process of waiting for my hair to grow again that’s truly challenging.)
This time, I hope I can truly make a full recovery and do my bit for the community. Also, hopefully my cancer journey as a teenager managed to inspire you and give you a more positive outlook on life. Quite a number of us assume that cancer only affects adults. On the contrary, I am a living example that that mindset is certainly untrue. It's not for me to tell you how to live your life, but you only live once, so treasure your life and your loved ones while you still can. Stop and smell the roses once in awhile, and you'll find that life is so fulfilling with just happiness and good health. A successful career, good grades - definite bonuses and great goals, but with life being so unpredictable; you'll never know what might happen next. Be content with what you already have, count your blessings and live life to the fullest without any regrets.
Believe me, I'm speaking from personal experience.
***
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15:06
Tuesday 24 August 2010
i define beauty like this.
The 1st of August 2010 is a day of much significance to me. That very same day was the day I finally get to shave my head and go bald. My hair loss only became apparent two weeks after my first chemo session. At first, it was just a few innocent strands. I assumed it was normal hair fall, since I kept my hair long before this. It wasn't unusual to hear my mum's complaints about her having to see strands of my hair on the floor everywhere at home. She likes cleanliness and neatness. My thick long hair back then did not help one bit. Then, more and more strands of hair started to fall at quite an alarming rate. I can't even tie my hair into a ponytail without seeing clumps of hair in my hands afterwards. It then hit me - the most obvious side-effect of chemotherapy is showing itself. Combing my hair was a nightmare. Waking up in the morning was also traumatising. Trust me, it does when you have to wake up, tidy your bed and see hair all over your pillow. Wow. I got frustrated and annoyed by this major hair loss of mine. I begged my parents to bring me out to have someone to shave my hair off immediately. Seeing my mum pick up strands of my hair on the floor without complaning, I was touched when she told me she did it so I wouldn't feel more upset at the sight of fallen hair. Truth is, I wasn't afraid of going bald. I was actually scared of having to witness the process of me losing my hair. It was a slow and heartwrenching event to watch. My hair acted as a confidence-booster whenever I go out to face the world. I hardly have bad hair days. As a person with major self-esteem problems before, my long hair has hid me from unwanted attention and accusing eyes. I'm not being dramatic, nor am I exaggerating. Yes, my hair did play an important role in my life as a teenager especially. I am proud to say though, I did not cry when I was having my hair shaved off. I admit, I did tear up occasionally because my mum and the nice lady barber who was doing the shaving were making supportive and encouraging comments. I giggled my way throughout, since it was actually pretty ticklish! Besides the lady barber, her assistant, my mother and myself, there was another customer who was watching the entire process of me having all my hair shaved off. She was shocked at my positive reaction. I can't blame her. It's a rare sight to see a teenage girl laugh the whole thing off. I never knew having your hair shaved off would take quite some time to finish. I think I spent more than an hour there. It's wrong of me to assume that shaving someone's head is just a simple process of 'snip, snip, snip, and you're done!', that kind of thing. My brother and our friend Wanda both suggested the idea of me getting a mohawk first before finally shaving all my hair off. I found that idea really cool, but I was too shy to bring it up with the barber. And seeing that the barber is from a Chinese-speaking background, I was at a loss. I did not know how to say the word 'mohawk' in Chinese, even though I can speak the language. Surprisingly, the message somehow got through thanks to my mum who has a better command of the language. I was lucky the barber was really nice and generous enough to spend the extra time and effort to get my mohawk done, and allow me to take photos of it before the final cut. I was also lucky of the fact that there were no other customers at that time. I was tempted to keep my mohawk, but since it requires styling and the fact that my hair is still falling off at an extreme rate, I said farewell to my mohawk. The barber's assistant said I looked really handsome. So do quite a number of my friends - both guys and girls. Aha, I'm really flattered by the compliments. "Give me some FIERCE, baby!" Hahah! This is my profile shot..
..and here's how it looks like from the back. There's a glimpse of my mum in the photo. She's going to kill me when she sees this. Heh. She reads this blog of mine, by the way. So hi mum! Anyway, I'll definitely go for this look again when I'm done with all the chemo sessions. And maybe get a hair tattoo at the same time, as suggested by a dear friend, Aishah Jaafar. Now that's something worth looking forward to! (: It's odd to look at my collection of combs nowadays. Hairclips, hair scrunchies, hair ties, hair bands and hair everything are now kept in a box and hidden from sight till the day I decide to have long hair again. I eventually will, no worries there. If I don't look into a mirror or anything that I can see my reflection on, I feel just the same as when I still have long hair. Funny, but true. Oh yes, going bald is actually a personal achievement for me. Since having long hair, the length of my hair has never been above my shoulders. I'm actually glad short hair will look okay on me, I never dared to try. There are so many short hairstyles that I'm dying to try, so that's one worry off my mind. Before:
After:
For now, I'll embrace this definition of beautiful. I have this newly found confidence that I'd never felt before. This is me, going all out for cancer awareness and support.
To cancer patients who have to go bald, it doesn't matter how you look like on the outside. It's the inside that is what really matters. We got to stay strong, and go for the win!
You think you're not pretty, and you frequently complain about your looks. Yes, you're not pretty. It's because you're beautiful. Be blessed that you have normal features, and a body with two hands and legs. So stop complaining.
You think you're ugly. People make fun of you, tease you, and even laugh at you. Hey, it's not the end of the world. They don't know any better. You must learn to love yourself. There will be people who'll love you for who you are, on the inside. So don't let those words hurt you and bring you down. You got to prove them wrong. Letting them see you feel miserable about your looks, it means they have won. So show them that you can reverse that situation, and let them stare at you in awe as you embrace yourself for who you are.
'Cause we are beautiful no matter what they say. Yes, words won't bring us down, oh no! We are beautiful in every single way. Yes, words can't bring us down! Don't you bring me down today . Beautiful, ©Christina Aguilera.
Cheers! Labels: lymphoma and me, musings
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Living As An Inspiration
Shin.1966 - 2009. "She lives forever in the hearts of those who knew her,
and know of her."
I watched a documentary about her battle against cancer on Mediacorp's Channel 8 in 2008, back when I was still fifteen. I was really touched by her strong will and constant optimism despite her condition.
I found her blog and sent her an e-mail, expressing how wowed I am by her. All I wanted then was to tell her to keep up the good fight, and she was doing at good job at it; I learnt a lot about life in that one night through her documentary and blog entries than in my fifteen years of living life - complaining and whining when I was actually one lucky brat. I honestly didn't expect her to reply.
Guess what? She did.
I would like to share her reply to me with all of my readers. It also works as a reminder to me that I should keep up the good fight as well. I hope she doesn't mind, but I personally don't think she will; bless her good soul.
11th November 2008.
Leonie,
Thanks for your kind e-mail. It's taken me a while to respond because I only just saw it. I look at my Gmail account once every week or so. This Yahoo account is more reliable if you want to contact me.
I truly appreciate your words of praise and encouragement.
You say that you're a 15-year-old Malaysian student and that you're not good with words? You should know that your short note was more articulate, well-written, and intelligently expressed than most of the comments I've been getting - many of them, adult professionals.
I don't know what you plan on doing with your future, but with your gift of expression, I think you've got a bright future ahead of you, professionally. And more important, you seem to have a maturity and insight beyond your age. I'm betting that you go on do something great with your life - not in terms of money or fame, but something that will make a difference to the people and the community around you.
Thanks, and good luck to you.
Shin
*** Shin had really good foresight. Even if I personally don't think so, I guess my friends, acquaintances, and strangers who have got to know of my cancer journey will agree that I did manage to 'make a difference to the people and the community around me.'
Rest in peace, Shin. My only regret then was that I didn't get to reply your e-mail in time. Cancer took you away not long after, and this will always bug my conscience for being such a procrastinator.
But you have enlightened me in so many ways, and you continue to live in my heart as my inspiration to keep up the good fight.
Keep up the good fight. That should work well as a personal motto.
To my readers who want to know more of this amazing person, do visit her blog at http://shinscancerblog.blogspot.com and watch the documentary I watched by clicking on this link.
Thank you Shin. Thank you for making such a difference to my life.
©Photo of Shin belongs to her family members. Click hereto go back to reading.
Links
| Ming Wei | Riaane |
Clare's 1000 Paper Cranes Project Lymphoma Coalition Mesothelioma Cancer Alliance Blog Notes Left Behind The Cure Starts Now The Ulman Cancer Fund
|
15:06
Tuesday 24 August 2010
i define beauty like this.
The 1st of August 2010 is a day of much significance to me. That very same day was the day I finally get to shave my head and go bald. My hair loss only became apparent two weeks after my first chemo session. At first, it was just a few innocent strands. I assumed it was normal hair fall, since I kept my hair long before this. It wasn't unusual to hear my mum's complaints about her having to see strands of my hair on the floor everywhere at home. She likes cleanliness and neatness. My thick long hair back then did not help one bit. Then, more and more strands of hair started to fall at quite an alarming rate. I can't even tie my hair into a ponytail without seeing clumps of hair in my hands afterwards. It then hit me - the most obvious side-effect of chemotherapy is showing itself. Combing my hair was a nightmare. Waking up in the morning was also traumatising. Trust me, it does when you have to wake up, tidy your bed and see hair all over your pillow. Wow. I got frustrated and annoyed by this major hair loss of mine. I begged my parents to bring me out to have someone to shave my hair off immediately. Seeing my mum pick up strands of my hair on the floor without complaning, I was touched when she told me she did it so I wouldn't feel more upset at the sight of fallen hair. Truth is, I wasn't afraid of going bald. I was actually scared of having to witness the process of me losing my hair. It was a slow and heartwrenching event to watch. My hair acted as a confidence-booster whenever I go out to face the world. I hardly have bad hair days. As a person with major self-esteem problems before, my long hair has hid me from unwanted attention and accusing eyes. I'm not being dramatic, nor am I exaggerating. Yes, my hair did play an important role in my life as a teenager especially. I am proud to say though, I did not cry when I was having my hair shaved off. I admit, I did tear up occasionally because my mum and the nice lady barber who was doing the shaving were making supportive and encouraging comments. I giggled my way throughout, since it was actually pretty ticklish! Besides the lady barber, her assistant, my mother and myself, there was another customer who was watching the entire process of me having all my hair shaved off. She was shocked at my positive reaction. I can't blame her. It's a rare sight to see a teenage girl laugh the whole thing off. I never knew having your hair shaved off would take quite some time to finish. I think I spent more than an hour there. It's wrong of me to assume that shaving someone's head is just a simple process of 'snip, snip, snip, and you're done!', that kind of thing. My brother and our friend Wanda both suggested the idea of me getting a mohawk first before finally shaving all my hair off. I found that idea really cool, but I was too shy to bring it up with the barber. And seeing that the barber is from a Chinese-speaking background, I was at a loss. I did not know how to say the word 'mohawk' in Chinese, even though I can speak the language. Surprisingly, the message somehow got through thanks to my mum who has a better command of the language. I was lucky the barber was really nice and generous enough to spend the extra time and effort to get my mohawk done, and allow me to take photos of it before the final cut. I was also lucky of the fact that there were no other customers at that time. I was tempted to keep my mohawk, but since it requires styling and the fact that my hair is still falling off at an extreme rate, I said farewell to my mohawk. The barber's assistant said I looked really handsome. So do quite a number of my friends - both guys and girls. Aha, I'm really flattered by the compliments. "Give me some FIERCE, baby!" Hahah! This is my profile shot..
..and here's how it looks like from the back. There's a glimpse of my mum in the photo. She's going to kill me when she sees this. Heh. She reads this blog of mine, by the way. So hi mum! Anyway, I'll definitely go for this look again when I'm done with all the chemo sessions. And maybe get a hair tattoo at the same time, as suggested by a dear friend, Aishah Jaafar. Now that's something worth looking forward to! (: It's odd to look at my collection of combs nowadays. Hairclips, hair scrunchies, hair ties, hair bands and hair everything are now kept in a box and hidden from sight till the day I decide to have long hair again. I eventually will, no worries there. If I don't look into a mirror or anything that I can see my reflection on, I feel just the same as when I still have long hair. Funny, but true. Oh yes, going bald is actually a personal achievement for me. Since having long hair, the length of my hair has never been above my shoulders. I'm actually glad short hair will look okay on me, I never dared to try. There are so many short hairstyles that I'm dying to try, so that's one worry off my mind. Before:
After:
For now, I'll embrace this definition of beautiful. I have this newly found confidence that I'd never felt before. This is me, going all out for cancer awareness and support.
To cancer patients who have to go bald, it doesn't matter how you look like on the outside. It's the inside that is what really matters. We got to stay strong, and go for the win!
You think you're not pretty, and you frequently complain about your looks. Yes, you're not pretty. It's because you're beautiful. Be blessed that you have normal features, and a body with two hands and legs. So stop complaining.
You think you're ugly. People make fun of you, tease you, and even laugh at you. Hey, it's not the end of the world. They don't know any better. You must learn to love yourself. There will be people who'll love you for who you are, on the inside. So don't let those words hurt you and bring you down. You got to prove them wrong. Letting them see you feel miserable about your looks, it means they have won. So show them that you can reverse that situation, and let them stare at you in awe as you embrace yourself for who you are.
'Cause we are beautiful no matter what they say. Yes, words won't bring us down, oh no! We are beautiful in every single way. Yes, words can't bring us down! Don't you bring me down today . Beautiful, ©Christina Aguilera.
Cheers! Labels: lymphoma and me, musings
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